We met with Ethan's surgeon on Tuesday. He's the one who repaired Ethan's cleft lip & palate almost 3 years ago now. We like him. So we took Hope to see him this week for a consult. To see what he feels needs to be done. You see, we saw another cleft team in Feb and we left there not too thrilled with them. They basically scratched their heads trying to figure out what to do medically with Hope. They threw out ideas, but we still felt like they were playing a guessing game. So we decided to let Dr. S see her.
She was great for him. She opened her mouth, let him look inside. And then he lifted her top lip and we saw a hole that we did not know existed. He's surprised she does not have food coming out of her nose.
What does he suggest? Well, first we need to see the orthodontist who is familiar with cleft kids. We saw him for Ethan and loved him. We made that appointment for April 23. Dr. S wants to have an appliance put into H's mouth to expand her palate. Then he wants to put a scope down her nose to see how the back of her palate is working when she talks. (Yeah, that won't be fun).
Depending on how that test comes back will determine if she needs surgery on her palate. BUT, she needs a bone graph. This is something that should have been done 5 years ago. About the same time they were closing her palate. This is a painful surgery & recovery. This will be done this year. So please start praying.
He also said we will need to break her top jaw and move it forward. She has a really bad underbite. This surgery will take place when she is 17 or 18 years old. He said this is a very painful surgery and recovery. But it needs to be done.
We also got Hope's hearing tested today. And to our surprise, she PASSED! Praise God. This means we can check off the ENT from our list of doctor visits. (at least for Hope. Ethan needs tubes again and has mild hearing loss).
We are taking Hope back to Shriners in April for a follow up to how she walks. We were supposed to have physical therapy but we have not found the time to do it. I do think her walking has improved since she's been home. I'm also praying they can confirm that she is growing.
And today, we called a therapist. We have been putting this off. Praying the behaviors we've been witnessing would go away with time. But they aren't. And it's taking it's toll on the other kids (and Bill & I). Today she had a toddler tantrum because she couldn't have lemonade. Last night she had a meltdown because she doesn't want to go to a thing for the girls NEXT YEAR! So, we are going on Tuesday to see if we can figure out what is going on. And hopefully will be helped with how to handle the meltdowns when they happen. Because I don't think we're doing it right.
So many doctors. Sweet Hope said "Why I see so many doctors? I don't want to. Doctor all done". I feel so bad. I wish she did not have to see so many doctors. But then she tells us "Mommy, I want teeth like yours. I want a nose like yours". And we explain that is why we are seeing the doctors.
Today while she was waiting for her turn to get her hearing evaluated, she drew Pooh. Freehand. No tracing. She just looked at a Pooh Bear that was on the wall. I was totally impressed. I could not believe this. I honestly had no idea she could draw without tracing something. I think we need to sign her up for art classes. She is so proud of her work. (BTW, Pooh only has 1 arm because before she could finish it was her turn to get evaluated). She also drew Piglet. I love watching her creativity come out. :-)
|Hope with the Piglet she drew|
|Hope's Pooh Bear|